Caring journey
JC is 57, he met his wife and her two sons in Stockton, they have been married for 22 years and moved from Stockton to Middlesbrough in 2015. JC has provided care for his wife for a large bulk of their relationship, initially providing part-time care for 7-8 years which developed into full-time care over the last 11-12 years as his wife’s support needs have increased. JC’s wife has complex mental health and physical support needs including diagnosis of arthritis, osteoarthritis, rheumatoid arthritis and fibromyalgia. The care JC provides for his wife includes practical support, emotional support, physical help, medication management and when required personal care all whilst ensuring his wife is as comfortable, safe, happy, and independent as possible. JC says, “I love my wife; I wish she wasn’t ill and will do as much as I can for her”.
Carers Together have provided JC with support over the years and "have been very helpful", they supported JC to access a Carers Assessment which resulted in JC being awarded Direct Payments to keep mentally and physically active which has enabled him to purchase a bicycle to keep fit and a laptop to keep connected. Carers Together helped JC to obtain a grant to fund a much-needed family holiday for him, his wife and his grandchild as well as a Max Card. JC connects to Carers Together as and when he needs support and they encouraged him to join the South Tees Carers Forum. JC enjoys being part of the Forum which has provided him with “stimulation, knowledge and increased confidence and assertiveness”. Before moving to Middlesbrough JC received emotional support from Stockton Link and has kept in contact with others to this day, highlighting the value and friendships formed through peer support.
“It can all feel overwhelming at times with the volume of day-to-day tasks to juggle and manage”.
JC highlights that “caring has impacted on his physical and mental well-being” through the amount of stress he has had to deal with over the years. At times JC has felt overwhelmed and “emotionally drained”. JC shares that some aspects of his caring role have exasperated this and recalls a particularly challenging period where he and his wife moved from Stockton to Middlesbrough, the change of address created a host of complexities with DWP and resulted in benefits been revoked and cut. JC had to go through the appeals process which created a lot of unnecessary stress and strain.
JC made the decision to leave employment in 2010 as the juggling act between holding down a full-time job and caring full time became too much to manage. This came to a head when JC thought he was having a heart attack at work which was later diagnosed as extreme stress, something had to give, and the only feasible option was leaving employment. JC described this period as feeling like he was “on a fast treadmill continuously which eventually became too much for me”. JC was emotionally and physically drained. JC describes leaving employment as a “relief”; not having to travel and not having the emotional stress of being away from his wife. JC recognises that although caring for a loved one can be difficult at times it can be hugely rewarding stating, “being able to spend more time together has been invaluable to us. Me and my wife have a really strong relationship because of this.”
In 2013 JC and his wife became grandparents for the first time. The child’s parents both led chaotic lifestyles involving substance misuse and JC and his wife were asked to provide kinship care for their grandson for one year, they both have a strained relationship with the child’s parents and over the years have tried to support them both as best they can whilst protecting and prioritising the needs of their grandchild.
They initially started having their grandchild two nights a week which was often changed at short notice or no notice to extended periods by the child’s mother. In 2019 were asked by social services to take on full time caring responsibilities for their grandchild and they were awarded a Special Guardianship Order (SGO) in 2021. The SGO provides them with full parental responsibility. JC shares that there was never a question of wanting to for their grandchild, but they did discuss how appropriate this would be given the needs of JC’s wife and the amount of caring responsibility JC was already dealing with.
“Our grandchild is now nine and has had a challenging start to life which results in occasional aggressive outbursts which can be difficult to deal with both emotionally and physically.” JC and his wife tried to maintain a level of communication and visitation with their grandchild’s parents however this was proving to be more emotionally draining for their grandchild and themselves than helpful, so they acted in the best interest of their grandchild and ended visitations.
JC and his wife have connected to Kinship Active and JC particularly enjoys attending social meetups with this group.
“Although caring is challenging it is extremely rewarding, being able to offer our grandchild a safe, loving stable home and share quality time together means the world to us. Being able to see our grandchild grow as a person makes all the challenges worth it.”
Looking ahead
JC wants to continue to be engaged with the South Tees Carers Forum, he feels he has gained a better understanding of how systems and services operate, he states that “support is fragmented, Voluntary Sector does one slice, Clinical Commissioning Groups & health services do one slice, and Local Authorities do one slice with little communication between them. I hope that we will see real changes locally because of the work and commitment of the South Tees Carers Forum and it is great to be part of something that showcases a real commitment to carers on a local level and eagerness to adapt and improve services to meet their needs”.
Advice for other carers
We asked JC what advice he would give to somebody newly becoming a Carer. JC replied, “it depends on the situation completely, there is no useful blanket advice. Other than that, you need to look after yourself as well as looking after your loved ones. Find out as much information as possible, ask for help and talk. You may not get the help you want but even the little bit of help you do get will be beneficial and one key thing I have learnt over the years is that unless you push you don’t get anywhere”.
JC recognises that his caring roles have made him more assertive as he has had to fight for the needs of his family.
Final thought from JC when asked how he manages on the most challenging days: “Put one foot in front of the other, and keep going, it’s the only way to do it”.
A huge Thank You to JC for sharing your experiences of caring for your loved ones!
If you are looking after a family member or friend who relies on you for support and would benefit from accessing support take a look at what services are available in your area: